Your early stage CKD questions are answered by Dr Kristin Veighey, who runs a GP-led kidney clinic at Southampton’s Living Well Primary Care Network Partnership. Dr Veighey is leading research into identifying and managing people with CKD at Southampton University.
Chronic kidney disease (CKD) is common: around one in 10 people are affected.
Receiving your diagnosis can have a huge emotional impact and you may have dozens of questions to ask.
“I think it can be scary when you hear the word ‘chronic’, especially if it’s early stages (1 to 3a). People look it up the internet, see lots of information about dialysis and transplants and assume they will definitely end up that way, but my message is not to panic that is absolutely not the case – less than 2% of people who have CKD will ever need dialysis,” explains Dr Veighey. ‘Even if you have more advanced stage 4 CKD, it doesn’t always mean you will need dialysis or a transplant. A specialist can talk to you about the options to help you make an informed choice about what is best for you.”
The word ‘chronic’ doesn’t indicate how serious your condition is. Chronic just means that it is a long-term condition.Dr Kristin Veighey
“The good news about being diagnosed early is that we can slow further damage with a combination of highly effective new drug treatments and diet and lifestyle changes. Most people with CKD are able to live full and active lives and feel well.”
“CKD doesn’t have many symptoms in the early stages, in a similar way to how high blood pressure doesn’t usually have any,” says Dr Veighey. “You can be walking around with CKD completely unaware that you have it. This is because the body is very good at compensating if there is a problem. It’s only if it progresses that you start to get symptoms.
“The word ‘chronic’ doesn’t indicate how serious your condition is. Chronic just means that it is a long-term condition.”
Early stage 1 to 3a CKD is often only identified if you’ve had a routine blood or urine test, although sometimes there are some mild symptoms such as ankle swelling, fatigue or itchiness.
Dr Veighey adds: “Even when you do experience symptoms, you might not realise they are connected to your kidneys, so it is important to discuss this with your GP if you’re concerned.”
You will probably still feel well. “Your kidneys are still working well, just not as well as they should be,” says Dr Veighey.
“Your GP may decide to prescribe medication to stop your kidney function getting worse. The drugs recommended by the National Institute for Health and Care Excellence (NICE), called SGLT2 inhibitors, are highly effective, and described by many doctors as game changers. They can make a big difference.
“Your doctor may also prescribe drugs to control other risk factors such as high blood pressure and type 2 diabetes. You’ll also be given advice about lifestyle factors you could change, such as giving up smoking, losing weight and eating a healthier diet. All of this can help protect your kidneys and heart health.”
You may need to take medication to reduce your blood pressure and control your diabetes. These conditions can make your CKD worse if uncontrolled as they damage blood vessels in the kidneys.
“For anyone with CKD stage 3-5, a statin is recommended. This should be discussed with your GP, or sometimes a pharmacist. This is recommended even if your cholesterol level is ok, or your QRISK score (risk of having a heart attack or stroke in 10 years) is ok. Reducing cholesterol protects the blood vessels in the kidney, and statins also have anti-inflammatory effects which are kidney-protective, “says Dr Veighey.
NICE recommends that people with CKD who either have diabetes, or protein in their urine (a urine albumin:creatinine ratio or uACR test above the level of 22.6mg/mmol) are prescribed SGLT2 inhibitor drugs which can help to slow down CKD progression and have also been shown to reduce your chances of having a heart attack or stroke. In addition, those with diabetes already on an SGLT2 inhibitor can sometimes be offered an additional drug called finerenone (a non-steroidal mineralocorticoid receptor).
“While kidney function reduces slowly with age, CKD is not always just a normal part of ageing, and anyone whose kidney function is getting worse should be reviewed and offered treatment if suitable,” says Dr Veighey.
“It’s also really important that other medical conditions that affect kidney function are treated and well managed, as the damage they can cause is irreversible. But good control of things like blood pressure and blood glucose levels can stop that damage from happening.”
“The standard advice is to reduce your salt intake, eat a healthy diet, cut down on processed foods, stop smoking and limit alcohol intake to no more than 14 units a week,” says Dr Veighey.
“Only patients with severe CKD (stages 4-5), or whose bloods show a specific problem with salts such as potassium, need follow specific kidney diets.”
Always speak to a health professional for personalised advice before you restrict your diet in any way. You will be referred to a kidney dietitian for advice if you need to change what you eat because of your CKD.
Kidney function isn’t related to alcohol like some forms of liver disease can be and can decline naturally with age in some people.
Several factors can affect whether you’ll develop CKD. These include:
Ageing: A measure called estimated glomerular filtration rate (eGFR), the rate which blood passes through the blood vessels in the kidney each minute, is used to measure your kidney function. Your eGFR drops as you get older as a normal part of ageing. CKD can happen at any age, but kidney function begins to fall by approximately 1 per cent per year after the age of 40. However, your kidney function may never fall as low as the threshold to be classed as CKD. “Kidney function does fall with age but that doesn’t mean it should be dismissed as normal if it drops below the threshold for CKD,” says Dr Veighey. “If you fall into this group, you will still need monitoring and, if necessary, treatment, to keep your condition stable.”
High blood pressure: High blood pressure (hypertension) can constrict and narrow blood vessels in the kidneys, causing damage, so they can’t remove all waste and fluid from the body.
Diabetes: Diabetes that isn’t well-controlled can damage blood vessels in the kidneys. This can lead to high blood pressure, which can further damage the kidneys.
Genetics: “Some people are more prone to CKD due to their genes,” says Dr Veighey. “Some may have inherited kidney diseases, such as polycystic kidneys, but for other people it is a combination of different factors that put them at risk, such as high blood pressure, cholesterol, or heart disease.”
Autoimmune diseases: “Some autoimmune conditions, such as lupus (systemic lupus erythematosus), can increase the likelihood of developing CKD. We do not fully understand why,” says Dr Veighey.
Lifestyle factors: “Some lifestyle factors, such as being overweight, can put more pressure on the kidneys and they have to work overtime,” explains Dr Veighey.
“We can’t reverse kidney damage that has already happened; however, we can help stop it getting any worse with drug treatments and lifestyle changes,” says Dr Veighey.
Most people diagnosed with CKD stages 1-3 will never need to see a kidney specialist and will remain under the care of their GP.
“If you’re young (under 50) and have developed CKD, your GP should consult with or refer you to a specialist to investigate what is causing your lower kidney function,” says Dr Veighey. “You might need to have further blood tests, or sometimes a kidney biopsy, to find out what the likely cause is.”
“In stages 1 to 3 CKD, you can expect to have blood and urine tests to check your kidney function organised by your GP practice at least once a year,” says Dr Veighey.
If you have stage 4 or 5 CKD you will need tests more frequently, every 3 to 6 months at stage 4 and every 2 to 4 weeks at stage 5.
“If you haven’t been called in for a check in a year, ring your practice and get it booked in, don’t assume they will send for you,” advises Dr Veighey. “Sometimes GP practices look at kidney function on blood tests done for other reasons such as blood pressure – but you should always also have a urine test done each year.
At stage 4 and stage 5 CKD, tests will usually be arranged in hospital under a specialist nephrology (kidney) team.
“Unfortunately, some people only find out they have CKD when they read it on the NHS App, which can be worrying and send them into a bit of a spin,” says Dr Veighey. “I think it’s important to stress that chronic kidney disease doesn’t necessarily mean serious kidney disease but that it is a long-term condition, and that it is highly treatable, but this can be hard to explain.
“It can be quite overwhelming to take in all the information about CKD at once, so your GP may offer you follow up appointments to answer more questions,” says Dr Veighey.
You could ask your GP practice if they have a nurse or health and wellbeing coach you could speak to.
Kidney Care UK also offer information about all aspects of CKD.
“Life expectancy with CKD stage 1-3 depends on the person’s age, the stage, the underlying cause of their CKD and any other co-existing medical conditions. Many people live long lives without being overly affected by the condition,” explains Dr Veighey.
“For stage 4-5 CKD there will be a significant reduction in life expectancy, especially in those who need dialysis.
“For everyone with CKD, there is also an increased risk of heart attacks and strokes. This is why it's so important to diagnose kidney disease early so we can prevent it from getting worse.”
“Most cases of CKD are mild and can be managed by your GP. Only around 1 in every 50 people diagnosed with CKD will go onto develop kidney failure and need dialysis or a transplant,” says Dr Veighey. “To put this in context, in the average GP practice with well over 8,000 patients, there will be a handful of patients with kidney failure and one or maybe two who need a transplant, so we are talking about a very tiny minority.”
“This is highly unlikely. Less than one per cent of people with CKD end up having a transplant,” says Dr Veighey. “Effective treatment and control of early disease can prevent this.”
If you do have kidney disease that is getting worse (approaching stage 5), you will be looked after by a specialist kidney team who can prepare you for a transplant if that is the best treatment for you.
Whether you are classed as disabled is determined by how well you are able to carry out normal everyday activities, rather than by the health conditions you live with.
According to the Equality Act 2010, a disability is classed as any physical or mental impairment that has a “substantial and long-term” effect on your ability to carry out normal daily activities.
This could be because:
- your CKD is more advanced
- your CKD is getting worse more quickly
- you have more protein in your urine
- your GP suspects you need further specialist tests to find out the underlying cause.
“NICE recommends that you should be referred to see a specialist if you have more than a five per cent chance of developing kidney failure (on the Kidney Failure Risk Equation, KFRE score) within five years,” says Dr Veighey.